January 19, 2012

At a time when school budgets for special education are stretched, the new diagnosis could herald more pitched battles. Tens of thousands of people receive state-backed services to help offset the disorders’ disabling effects, which include sometimes severe learning and social problems, and the diagnosis is in many ways central to their lives. Close networks of parents have bonded over common experiences with children; and the children, too, may grow to find a sense of their own identity in their struggle with the disorder.

Is the controversy really about how much money the government must spend? Or is it really about helping people with their feelings about their children? Or... I know this seems really weird... could it be... I'm afraid to say it!... could it be that there really is a specific disease and scientists want to be rigorously scientific about what the disease is?

My son was diagnosed with autism in 1993 and at that time you had to be pretty low-functioning to be labeled autistic. I would say that the definition of autism/Asperger's has become a lot more liberal, to the point where people will tell you that their autistic nephew is studying accounting at such and such university, which just sounds ridiculous to my ears. A little tightening of the diagnosing standards isn't a bad thing and is probably somewhat overdue, if anything.

A couple I know here in California was delighted that their two kids just made in into the autism diagnosis, because that gets them a couple of handicapped parking passes that let's them park anywhere, usually for free.

I don't think you can really apply the term "rigorously scientific" to the Diagnostic and Statistical Manual. The criteria for the disorders are decided by consensus. There are no specific blood tests or MRI patterns that indicate that a person has schizophrenia, PTSD, bipolar disorder, or Asperger's. They are determined by clusters of signs and symptoms, and the sites of the dysfunction are usually not known for sure. It is much easier to diagnose a people with high blood pressure, or kidney disease, or diabetes than it is to diagnose someone with a psychiatric (or even early neurological) diseases.

Parents of kids with autism spectrum disorders are looking for ways to get their kids able to function in the regular world, not get a free ride.

A Globe investigation has found that this Supplemental Security Income program — created by Congress primarily to aid indigent children with severe physical disabilities such as cerebral palsy, Down syndrome, and blindness — now largely serves children with relatively common mental, learning, and behavioral disorders such as ADHD. It has also created, for many needy parents, a financial motive to seek prescriptions for powerful drugs for their children.

And once a family gets on SSI, it can be very hard to let go. The attraction of up to $700 a month in payments, and the near-automatic Medicaid coverage that comes with SSI approval, leads some families to count on a child’s remaining classified as disabled, even as his or her condition may be improving. It also leads many teenage beneficiaries to avoid steps — like taking a job — that might jeopardize the disability check.

The latest federal statistics, obtained by the Globe through a public records request, show a stunning rise over the past two decades in the number of children who qualify for SSI because of a variety of mental disabilities.

When the definition of Autism Spectrum Disorder is so broad that 1 in 114 children is diagnosed, it's too broad.

I have a 21-year-old daughter who has a developmental delay, epilepsy, a moderate hearing impairment, and lupus. She's more like a 3-year-old who doesn't speak much or well. She can feed herself and dress herself. Sometimes she gets a top on backwards or her shoes on the wrong feet though. She uses the bathroom and doesn't need pull-ups or diapers. She needs help showering and at "that time of the month". She loves Barney, The Fresh Beat Band, Max and Ruby, and Transformers - especially Sam and Bumblebee. She won't ever have a job or be able to stay home alone. We don't get aid.

Rick: Here in Illinois there has to be a disablility that interferes with the ability to walk - such as needing a cane, walker, or wheelchair; leg braces; or oxygen - to get a disabled parking permit (hanger or plate).

Unfortunately, anytime someone gives away money,there are those willing to abuse the situation. Yes, there are some people willing to use their children to further feather their nest. Or more probably buy the next pack of smokes, six pack of Bud, and their next fix. Disgusting but true.

When I was growing up we didn't have all these "diseases". If you were fidgety, the nuns would beat it out of you. Not very enlightened, but very effective. Most childhood diseases could be fixed with the proper application of nuns.

I'm waiting for the time when just being born a certain race will be diagnosed as a disease, and protected under the Americans with Disabilities Act.

I don't mean to sound harsh here, I know there are plenty of children, and adults with the need of help. I have several friends that have had disabled siblings. I know how that can break your heart, and lift it up at the same time.

Ps: It is disabled, not differently abled. Differently abled is a panacea we feed to people so their feelings aren't hurt.

Pps: I went totally deaf once for a week. Best week I ever had. Swear to God. No phone calls, no crowd noise.

My 11-year-old son was kicked out of preschool at four for behavior problems. Then, still at four, he went out the bedroom window when I thought he was napping, got on his two-wheeler and rode to Walmart to buy a Thomas toy. Walmart is about 1-1/2 miles from our house. He crossed a four lane road at a traffic light. At four. Police brought him home because the manager called about a little boy there by himself.

At five, just before kindergarten, he was diagnosed wiht ADHD and put on medication. He hasn't had problems at school. In first grade he was reading so well he went to second grade every morning and back to first grade in the afternoon.

Our district just started an "enriched" fifth grade program. He's now in a gifted class doing challenging work and still getting straight A's.

All without and IEP (Individualized Education Plan) and special ed.

But I'm an involved parent. I don't cut him slack. I keep my expectations high and he rises to meet them.

The point about the increase in actions that are rewarded is a valid one, but I would like to go on a bit of a tangent.

Autism is not a disease, it is a disorder of neural development which is diagnosed by observation of impaired social interaction and communication, and is usually accompanied by repetitive behaviours.

It has a strong genetic basis, and is not a disease, if by disease you mean something acquired from an external source or as an effect of an external agent. The word is used with a variety of meanings, and you may be meaning 'disease'= thing that impairs function', in which case no problem.

When I was 3, I walked that far from a public swimming pool to a Thrifty's because they had ice cremem there. I did it again at age 4 from my house to a different Thriftys in a different part of town,. Sounds like your son should have been diagnosed as "normal boy".

My step-daughter has gamed herself a crazy check with some public health psychiatrist/psychologists and a law firm that specializes in submitting SSI claims. It is quite fraudulent; her claim was an inability to keep a job, which was untrue, if she was interested in the work; she always has lacked a work ethic. But, she has always been a Great Victim of Life, all self inflicted.

All you have to do is shop the right doctors and say the right things, according to the checklist. It took her about 6 months to game it. But, she didn't go through any of this until after she had a daugher with aspergers. I'm sure she has done this with her aspergers child, for income as well.

"...could it be that there really is a specific disease and scientists want to be rigorously scientific about what the disease is?"

As knowledge accumulates, definitions get tighter. In astronomy, what used to be a planet is now a dwarf planet. In anthropology, Neanderthal's used to be considered a step along the evolutionary pathway to modern man, but multiple fields (genetics, medical science's imaging techniques being applied to analyses of fossils, etc.) generating converging knowledge demonstrated that they were their own lineage, interbred with ancient humans but not a waypoint along the way to modern ones. In physics, most everyone with at least a high school education has learnt the development from Newtonian physics modeling the universe to relativity expanding that.

Accumulated knowledge leads to more specific definitions. It's simply a fact of knowledge generation. Understanding evolves, and it's a necessary process. Without it, no advancement of knowledge is possible.

But how does that affect people in the medical sciences who are classified with a certain diagnosis under one definition who may be excluded under another? At first, it's up in the air. It may be a freeing process that doesn't shackle them with a diagnosis that only superficially applies. Or, it may be a damaging judgement that suddenly takes them away from the therapies they're used to. In the beginning, it's not possible to say that the effects will be overall good or overall bad because there will be a variety of results from the changes in diagnostics.

However, in the long run, it will be beneficial because definitions are no longer so broad that "one size fits all". Whatever the patients will eventually be diagnosed as when discoveries refine what's known will be more specific, more applicable. It'll actually be closer to being descriptive to that patient, instead of rendering them a member of a large group on the basis of older, broader criteria. That will pave the road to treatements being more effective since they'll be honing in on more specific symptoms.

So in the long run, this has to happen. It's better overall. No one talks about "dropsy" any longer; nowadays, treatment are specific to the specific sort of edema that a person is experiencing. "Ague" is an archaic term now because the medical field knows that there are different causes of intense fevers, and concentrate on those rather than generalizing about a patient's temperature alone. It's important to progress.

But what about those who fall inbetween old diagnoses and new ones? That's where art takes over for science. If someone has a disorder, then the doctor still needs to apply the best care given what's known. It won't be perfect - due to what's known vs. unknown, medical care never is - but if current knowledge gives reason to consider people outside a diagnosis, it's torturing logic to argue that they deserve to remain within the diagnosis. And I am hard pressed to see how mistreatment is to a person's benefit when it's known that a person doesn't fit within a diagnostic criteria.

"All you have to do is shop the right doctors and say the right things, according to the checklist."

Yep, and it is not even very difficult shopping. People just assume if you are a psychologist that you will treat them like a victim and look for someone else to blame. The most interesting recent example for me was a mom who wanted me to sign off on her son's disability of ADD when he does not have it as bad as I do!

I get fired about twice a month for telling (usually moms) that having a kid with the person they did may have been the worst choice of their life, but they made that choice and they need to face the consequences. I don't help people take children away from safe parents.

I have a son with ADHD. We fork over $400 every three months for medication, and $75 similarly for doctor's appointments, and spend a lot more time than we'd like overseeing his homework, but I certainly hope we're not stuck with asking for an IEP, extra time on tests, etc., later on. The point being, a pyschatric diagnosis isn't a yes/no sort of thing, but an issue of severity, and no special programs should be so black and white as to provide endless services for those with a label and nothing at all for those without.

On the other hand, my son has some kind of autism-like something. No label. He's very poor in social skills or understanding, always wants a routine to his day, etc. But he doesn't have repetitive behaviors. It's been difficult to get help for him (either at school or out-of-pocket) because of this mentality that it's the label that drives everything.

For kids with "real" autism, the very young ones who are apparantly helped tremendously by an early diagnosis and full-time one-on-one therapy, this could have tremendous consequences.

With respect to autism, all of this feels very much like stumbling around in the dark until researchers can identify the causes and what exactly is going on in the brain. I wouldn't be surprised if there were multiple autisms, manifesting themselves in similar ways but with different causes.

Everyone wants their kid to be perfect and popular and they want to be able to blame it on something when they struggle socially. There has always been a spectrum of personalities and those on the low end are not necessarily disabled, just unlucky. In Wisconsin, insurance companies are now required to provide $50,000/ year of benefits for autism therapy. However, there is no licensing or other requiements for autism therapists so anyone can be an autism therapist using any therapy that they can sell and insurance companies have to pay. I think this is too bad because it takes money away from helping the low functioning kids who are really disabled by autisim. And I think it helps to increase the number of people diagnosed with autism because I think that insurance coverage influences doctor's opinions, especially when parents are pushing for answers.

"With respect to autism, all of this feels very much like stumbling around in the dark until researchers can identify the causes and what exactly is going on in the brain. I wouldn't be surprised if there were multiple autisms, manifesting themselves in similar ways but with different causes."

This is something I suspect too. The medical profession is doing the best with the descriptions and symptoms they have at hand, but they just plain don't have a bullseye on the specific causes yet. Like various "fevers" or, as I said above, "dropsy" in the past, I predict that the term "autism" will eventually go the route of becoming slowly archaic, first becoming the name for an entire family of specific, named and described individual disorders, much the way "cancer" is used now (just among brain cancers, you have blastomas, gliomas, ependymomas, etc... and then you have sarcomas, melanomas, and so on), and then eventually simply being the "old name" for what the old conceptions were that used to contain what the specific disorders will be called. From what little I've read about it, it's already quite a ways there, since the current DSM entry calls it "Autism Spectrum Disorder". Medical science appears to already realize that the broad definitions cover multiple different disorders, so in the long run, they'll eventually get around to characterizing each individual one in more depth, and with more specific criteria for diagnoses and treatments for patients.

But it's a long ways off yet, unfortunately. Medical science is quite advanced in many things, but in many others, it's still in the early days.

I wonder if any psychiatrists happen to be reading this thread. I'd love to know how the profession characterizes the current state of autism knowledge. And for them to correct any mistakes I may have made; I'm very much a layman on this topic.

There's no question in my mind, after speaking candidly with teachers, that the ever increasing demands and breadth of 'special needs' children is tremendously taxing to schools ability to effectively educate any children at all.

He is indeed a "normal boy". We are free-range parents as we were raised free-range kids.

He was politely requested to dis-enroll at pre-school because he had been misbehaving and the teacher was holding him on her lap and he threw his head back and knocked out one of her teeth.

He had a couple more "melt-downs" throwing toys. knocking over the coffee table, pulling all the cushions off the sofa. We took him to be evaluated and got him under control before he got labeled at school.

Jane - we have an appointment next week. We've gone to about once a quarter which is nice. His meds went generic about a year ago which saves on those costs as well.

He's always been a social butterfly, but easily bored with what one friend or group of friends is doing and then he's off to another. We finally got him a cell phone so he wouldn't have to run home between each visit (or attempted visit if his friend wasn't home or couldn't play).

He's starting to stutter some becasue his mind is working so much faster than his mouth can speak.

Our family has the genetic whammy for autism spectrum issues. Our Apserger kids have needed help from the school system. We have also home-schooled one of them for part of her school career. The therapies they received in school and through other sources, with help from SSI and Katie Beckett program, are their ticket to independence. One has completed a vocational program, one is in a vocational program, and the other stands a chance to make it in college if we can help him put some extra structure in place. So our kids, assuming that the economy opens up, will be taxpayers themselves and their taxes will more than make up for the therapies they have received.

It has taken a lot of work, extra energy, and creativity for our kids to realize these goals. The difference that therapy has made is the difference between a productive life and a struggle to survive.

Some Asperger people are able to go to University. Long before anybody ever heard of Aspergers, my dad, who is an Aspie, earned a masters in chemistry. Personally and emotionally, he is paranoid because he never has understood how people tick; but he was able to earn a good living and work well for his company. His company took the view that "he's a nut, but he knows his stuff, so just leave him alone to do his thing."

Unfortunately, other aspies have difficulty dealing with necessary skills for dealing with school, work, and life. Aspergers people often lack intuition about social situations. So while your neurotypical child learns by steps A, B, and C, the Aspie child has to learn steps A.1, A.2, A.3, A.n before he can get to B.

I grow weary of people who don't have kids with Autism Spectrum disorders making pronouncements. Yes, people game the system. That doesn't invalidate the real need for services.

I can't shake the feeling that Aspergers, in particular, is just taking a perfectly normal set of personality characteristics and packaging them into an illness. Like a modern variation on Hippocrates' Four Temperaments.

just taking a perfectly normal set of personality characteristics and packaging them into an illness.

When these characteristics appear in an extreme form, when they interfere with one's ability to handle normal daily interactions and tasks, then it's a problem. I have a son who can teach himself the grammar of any foreign language with a dictionary and a textbook, and is absolutely brilliant within a narrow field; but he also lacks a normal sense of proportion and functions at daily tasks like somebody with Alzheimers.

I agree with you that people are too eager to label some things as mental health issues, and maybe some clearer definitions would be helpful. Bur I have had so many people make "helpful" observations without knowing the situation, that I get really frustrated.

I was elated when I heard the news that the autism diagnosis may be defined more strictly/narrowly.

My son was diagnosed in 1993 at the age of 2 1/2. His verbal abilty was measured in the bottom one-tenth of the bottom one percentile. He was 12 before he said "Mommy" and very rarely says it unless someone prompts him (rarely being about once a year, if that). He'll be 19 next month.

Making the diagnosis under the DSM-IV is like ordering from a Chinese menu: 2 things from Column A, one thing from column B, etc. See here: http://www.autreat.com/dsm4-autism.html

I've had people come up and tell me that their child has autism, and then go on to say that they are just graduating from college and about to get married. (True story, I'm not kidding.)

As for the endless IEPs, I was at a meeting once where a woman got up to complain about how the IEPs are harming her children's education because the teachers are "constantly" away from class because there have to be 18 people at these meetings. Out of those 18 people, 16 of them are getting paid to be there and 2 of them have taken off work.

With the current rules it's just too easy for parents of a kid who's socially awkward to fiddle things around and scrape up their "2 from A and 1 each from B and C". It's like hypochondriacs diagnosing themselves on the Internet and shopping around for doctors who will sign the papers.

I would be so thrilled if my son were to become functional. I'd give up everything I have, not only his $698 a month, to just have a 10-minute conversation with him.